FINALLY, someone is out there, fighting for Endo to be classed as a disability. I felt such relief. Finally it might get taken seriously. I might actually stop feeling as though every trip to my GP is going to be a fight. Begging for treatments and hearing the same answer. No. Endo isnt serious enough for us to allow you to have that/do that.
Not serious enough?!? I havent been able to work in over a year, and I am in pain every single day. How is that not serious?!
So anyway, I signed the petition and felt positive about the matter. But then I read the small print. The House of Commons will address the petition once it has got 100,000 signatures. It is currently on 622. Not the best is it?
I was wondering, does anyone have any bright ideas on how to get the figures up?
And can everyone pass it round to family and friends please?
Aimee x
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Fletch
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Hi
I have just posted the link on my facebook page and within 30 minutes 5 more signatures. I know it doesn't sound like much but if everyone does it we will get there!!! xx
I agree it is good but we also need to be careful it doesn't make everyone with endo seem unemployable either. If this happens, as soon as an empoyer hears 'endo' - that's it you will have lost the job. I will probably get lynched now.
Completely agree with this statement. It would be awful if having endo deemed a person unemployable. But this could be quickly nipped in the bud at an interview when chatting with employers. A person can disclose it and state 'however, it doesnt effect me or my work in any way', or not disclose it at all if it has no effect whatsoever on their work.
Im thinking more along the lines of the people who cant work because of endometriosis, and their/our struggle money wise. That is the angle that it effects me the most. I would like to claim disability allowance, but I cant apparently. I feel that endo is not taken seriously enough. Maybe if it was a disability, people/GP's/employers would be a bit more sympathetic.
I have added it to my facebook and sent out messages to everyone ty for sharinfg the link.
As for not making women with endo unemployable... I don't know about you girls but if I mention endo at interview I know if they know what it is as their eyes glaze over and they start saying yes well we will be in touch, and when I ask if they know it is they dismissively say "yes yes I know what it is" then give you a shove out the door with contempt on their faces.
The only people who employ me knowing I have endo are people who have not come across it before as employers say it makes us unrealable and we have to take alot of time off work for illness and hospital appointments.
If we can get some recognition of this as a diability it would be a big help. I don't think its on this list as yet, that is just saying what endo is. I have asked a few GPs about it being a disability and they think about it then say "hummm well I suppose you could argue it." If it was on the list they would say yes if it is bad enough.
Although the pelvic pain of endometriosis may cause its sufferers considerable distress; it is unlikely to result in significant functional problems most of the time. There may be short periods of increased disablement; however chronic sustained functional impairment is unusual; therefore unlikely to have care/mobility needs.
That is from that DWP link from littlebird and is complete rubbish!!!! I haven't been able to walk properly for years and am in agony everyday, no wonder they don't take us seriously. Makes me so angry.
i totally agree, i have just read that myself and it gets me so frustrated that they dont have a clue whats going on. i also struggle daily to get out of bed and smile and they can go on with there lives looking and saying theres nothing wrong, they dont see anything wrong because half of us poor women are in bed unable to get out of bed never mind the house it is a bloody disgrace, they should open there eyes and see the suffering that they are neglecting to support
In Endometriosis, there are unlikely to be problems so significant as to cause care or mobility needs.
Endometriosis returns in about one in five women. Hormone therapy is sometimes given after surgery to supplement the surgical procedure, and try to delay return of endometriosis. The ovaries may or may not be removed at the same time. Removal of the ovaries has side effects including sudden onset of the menopause, but it reduces the risk of the endometriosis returning. This is only usually considered for women with severe symptoms as a last option, or in women who are not planning to have children.
Ultrasound, X-ray and Magnetic Resonance Imaging (MRI) can be used to see how the endometriosis is responding to treatment.
All information must be taken into account when considering the duration of disabling effects and the duration of disabling effects must be based on the particular circumstances of the individual claimant.
Amended September 2011
Don't worry all you need is a hysetectomy and you will be fine!!!! Only 1 in 5 return..... you do know thats 20% if it was 20% of breast cancer patients relapse there would be outrage!!! Grrr
As I read the link, I felt exactly the same kind of rage. It really is no wonder that people dont think that endo is that big of a deal, when articles like that are written. It's all so untrue. Who on earth writes these things? and where do they get their information from? Certainly not an endo sufferer. Plus, it was written in 2008. Where is the updated version? Its yet another example of Endometriosis not being taken with any kind of impotance or seriousness.
More reason to get the epetition circulating so it can be discussed in The House of Lords! We're still very low on the numbers though. I fear that the only way to get the numbers that we are after is for some kind of ambassador to go on the television and appeal....
If you have a look ladies we are already up to 722! I know we have a LONG way to go. But i genuinely believe if we all shout loads enough and in the right places and at the right people we can do this!
I am emailing it to local GP's next week, I feel this should really be shouted about. Pot to everyone you know on facebook, and then get them to share it, e-mail and get them to e-mail it.....
We deserve to have some sort of recognition from the authorities that this disease is not easy to live with, it cripples our lives and our day to day. if we have to go to to London with banners............... So be it!!!
I totally agree with you HannahMary if thats what we have to do is go to london with banners and get our cause recognised that way then I say lets do it even tho none of us are really well enough to do so but I say lets bring it on. Endometriosis isnt made aware like other illnesses which I think is wrong. The suffering we go through is unbearable. I won my DLA last year for 2 years which runs out this July but I won it through my depression not my actual endo which I applied for. This took me 5 years claiming and fighting and one of the questions asked by them was if you could get rid of one illness which would it be your endometriosis or your depression to which i answered my endo. The appeal judges then looked puzzled and said why to which my answer was well obviously if i wasnt in pain 24/7 and wasnt infertile and wasnt in and out of hosp through pain and operations I wouldnt be depressed meaning Id be able to go back to work. I say we should all stand up and fight for our cause by which ne means necessary. Endometriosis is a disability people really dont understand and because they cannot see it on the outside they think we are ok
Hi. We did one of these petitions back in 2009 and received a reply from Downing Street regarding this. I tried to find the link but can't seem to now, although i will keep looking. Basically the prime minister stated that when applying for disability for Endometriosis, you will be treated exactly the same as if you applied for any other medical reasons. He said the criteria for benefits is the same as other disabilities, and you would be assessed accordingly and fairly.
However, I agree with sending another petition, and will support the fight all the way.
Thanks for letting us know Chels78... I must admit, somebody else has told me a similar story. Now I am not sure whether it is something worth persuing? I shall look into the legalities of it and get back to you ladies.... But i'll be honest, I have been told this, so we might be wasting out time with this petition xx
Any other thoughts? Does anyone else know the Law particularly well?
I think the issue it a lack of awareness rather than a lack of legal officiality. A friend who knows law replied to my facebook saying the same thing about how each case is assessed on its individual circumstances. I think that although offocially this is what happends.. I don't think the decision makers have enough understanding of what endometriosis is (and frankly neither do alot of GPs)..... perhaps we should be campaigning more strongly for more GPs to be educated about endometriosis so they can refer more effectively and support people with it/being investigated for it better.
Better than one of my GPs (who shall remain nameless) who said very sternly to me (as if I were making a fuss about nothing) after my hysteroscopy results showed no polyp inside my uterus "there is no evidence that you have endometriosis" to which i replied "apart from the heavy bleeding, the multiple characteristic types of severe and significant pain, the nausia, the fact that growths were detected on the ultrasound but they were not found inside my uterus indicating that perhaps they are outside.... and the fact that I have a family history of it?!"... he then said "oh, does it run in families?"....
I think its the ignorance we need to tackle within society and the medical profession... (BTW i actually like doctors... I've just had a few arrogant ones that have been difficult and it has upset me).
I still don't think this should dampen our spirits. I have been on a mission to get this noticed by as many people as possible. I think it'll have to be pushed in waves and in different directions...??
I too have posted the petition link on my FB page and emailed it to friends and family, guess its not enough. Is it worth asking Endometiosis UK and the SHE Trust to raise the proile of the petition in their awareness campaigns and amongst their members?
Also, anyone with a long term condition can class themselves as having a disability. There is no such thing as a disabled register anymore.
This can be anything from cancer to endometriosis, the only difference between these two is that if you are off work due to cancer treatment etc then you are more likely to be able to apply for DLA benefits. However, if you have endo then you are not entitled to apply for certain benefits e.g. DLA as its is not recognised as a disability......even though the law says that if you have a long term condition then you can class yourself as disabled....CONFUSING...yes I know.
Also, employers should support staff who class themselves as disabled where practicable and reasonable.
Hi everyone,
This is a really difficult topic and touches at the heart of many of our lives - I wanted to add my comments on it firstly because I no longer work due to endo and secondly because I am doing some research on endo, work and disability at the moment. In commenting here, please know that I have 100% sympathy for all you ladies who are suffering and who manage work issues with endo - this is tough stuff and yes there is a lot to do with awareness. There is so much work to do and we all need to continue with raising knowledge about endo, as well as working with employers to see what is possible to achieve as there are things employers can do. There is also much to be done to raise awareness generally.
As SL72 says, anyone with a long term condition can class themselves as having a disability if this affects day to day activities - even if this is intermittent (as it can be with endo). However, there are very few conditions that are specifically covered by name in the Equality Act - this is because there is wide recognition that there are many illnesses that can be disabling for some individuals, but they may not be disabling for all. What matters is that each person is considered on their own personal case - endo has such wide ranging and varied effects that this is extremely important.
Having been down the route of asking for reasonable adjustments due to my own endo, I know I have been lucky to find sympathetic and supportive occupational health people, HR and other staff who tried their best to make what adjustments they could - but ultimately I became too ill even to do those so I lost my job. I was lucky that this was done sensitively and in the best possible way. I know there are lots of women who are less fortunate on this - therefore work needs to be done with employers. This is not a simple task and again there is a lot to be done.
If we fight for endo to be recognised as a disability, we are however ignoring the proportion of women whose careers and lives may be detrimentally affected because they are automatically classed as 'disabled' - yes this could go against them in interviews (because an employer could decide that they are unable, for business reasons, to make reasonable adjustments that may be needed - even if the person is not asking for these). On the other hand, if a woman with endometriosis is affected with disabling symptoms, they should be covered by the Equality Act - the Equality Commission have a very good helpline and can give advice on this. With regards to ESA (replaced disability living allowance), I am disappointed to hear from a number of women that their assessments have been very much a tick list that has not considered their symptoms and issues - I think this one is more difficult and has been affected by the current economic climate. If you are facing issues claiming ESA, I would recommend contacting your local MP and explaining your story.
I wish there was an easy answer on this but I don't think (a) a blanket approach works for endometriosis and (b) that this is achievable. I realise saying this is hard, because many of us have fought hard even to get a diagnosis and have lost so much to this disease - but there is just no way to shortcut the dialogue that we need to have, not only with the government, but also with employers, with healthcare professionals and with the wider general public.
This is a difficult disease. Please be assured that there are many of us who are fighting to get a better deal for all women with endometriosis.
Thanks for this Carol. It's a hot topic isnt it? And I appreciate your diplomacy. As excited as we are all getting on here about it being classed as a disability; it appears there is a 'bigger picture' for us to address. It is awareness about the condition that is needed.
It has already been copied and pasted during this convo, but I must reitterate. This statement is written on the Department of Working Pensions website, and they are the people that ultimately decide whether you get 'disability allowance' or ESA. They say;
“Although the pelvic pain of endometriosis may cause its sufferers considerable distress; it is unlikely to result in significant functional problems most of the time. There may be short periods of increased disablement; however chronic sustained functional impairment is unusual; therefore unlikely to have care/mobility needs.”
This is what we are battling against. No wonder some of us are being declined for ESA, when these are the guidelines that they are following. What is important for us to ask, is, how can we get them to review this simply untrue statement? Because if it isnt changed, and that is what they refer back too every time a case is reviewed, then we will never get anywhere!
What is it that you are working on at the moment Carol? You say you are getting involved in a simila topic. I'd love to get onboard if there is anything that I can do? Im very passionate about this topic.
Ladies I think we should all concentrate on getting more awareness about our disease, because clearly, from the above statement, the public perception and general concensus is a lot different to what 'actually' goes on behind our closed doors. I apologise, because it was me that posted the epetition, and the ins and outs of the law were unknown to me at this time. But it is clear that all of us are egible to apply for disability allowance if we like. But, we are unlikely to get it because no-one takes Endometriosis that seriously. We need to change that perception.
I think that upon reflection I agree with this.... I do think that it is more vital that the medical profession and decision makers are correctly educated about the condition... I think that would be an aim that results in a fair outcome for those who need disability benefits aswell as those who can work and who want to ensure employers don't dismiss their ability to do a job just because they have endometriosis. luckily the Disability discrimination act means that they can't ask whether you have a disability before offering you a job. They can ask afterwards... that was my understanding of it anyway.
It was great meeting you at the meeting in southampton. I won my ESA claim by tribunal like I explained if I can give any help more than happy to do so if you email me victoriahollis@ymail.com
I totally agree with Crystal_willow. We might be treated 'fairly' when applying for any kind of benefit, but she's right when she says its not a recognized condition and this could go against us. This is why we need to pursue this and make sure this terrible disease IS recognized as a disability. Lets keep fighting ladies xxx
Hi ladies,
It is really good to have dialogue on this - Fletch, thank you so much for posting what is on the DWP website as that needs to be addressed as clearly this is what is affecting ladies with endo who try and claim benefits. I don't know how common 'chronic sustained functional impairment' is but I think it is probably more common than the 'unusual' that they state. Certainly as a support group leader I have come across other ladies who can't work due to endo - I don't think it is as unusual as they think. I wish it was! You don't need to apologise in any way for posting about the e-petition - it would undoubtably help some ladies with endo but it would go against others. This is such an individual disease that affects each woman differently and it would be unfair to
penalise some women, when what is actually needed is recognition about what endometriosis actually is and what is means to some of us. This is one of the most common conditions that affects young women in their reproductive years - in fact there are as many women with endo as there are women with diabetes and yet everyone has heard of that. We need everyone to have heard of endo too!
Fletch, I am updating literature on this topic and yes it would be excellent to have your views. I will message you my email address and hopefully we can discuss the issues further, that would be really useful.
I am an active volunteer at Endometriosis UK and this is an area that I am currently working on. I am 39 and have lost my career to this disease - a career that I worked very hard for. It was one of the last things I had to lose. Yes there is a lot to be done on so many levels. It's Awareness Week from 5-11th March - let's keep sharing our stories, one day people will know what endometriosis is and how it has the capacity to seriously damage our lives.
It's a joke. I've ended up in a and e a few times due to endo pain. After my latest episode left me unable to walk and do things. My return to UNi was delayed and I am under the disability team there. But they said I may have to leave my studies if it continued. I have already had work issues over the last decade with threats etc.
Trouble is we're in a catch 22. We want to work or study but at times endo renders us helpless. There should be financial support for women who have endo problems in the form of a grant Maybe I could start to set one up. I mean others get help so why isn't there something in place?
im classed as disabled and unfit for work by employment and support allowance but not by disability as i can walk a bit depending on how much pain im in and that i can get out of bed by myself . but i know that citizens advice are trying to get chronic pain due to illness classed as a disability so keep up the fight
I have read the really lousy description of endometriosis and am disgusted.
I have signed the petition that is running for endo to be recognised as a disability - I had to fight long and hard to get DLA for my disability caused by endo, and it seems that in 2015 I will have to reapply for DLA or the new PIP, as even those with indefinite disability living allowance are being made to apply again by the sounds of things, which is going to be a nightmare considering the amount of drugs I am on for pain relief and pain management every day.
I would like to know who updated the info on the DWP site regarding endo because they still haven't got it all correct, a majority of essential information is missing, and I am wondering if the DWPs Decision Makers still do their research with this useless piece of information and maybe that is why so many women get refused what they are entitled to?
Linnyloo if you are still with the CAB don't give up, the CAB helped me to win the DLA after a lengthly battle in 2008.
I really would like to know who it was that has been misdescribing endo on the DWP site so that they can be corrected and update the information fully and properly!
Hell, I can do their job better even in agony and doped up to the eyeballs with morphine, because that is how shoddy their work and acknowledgement of endometriosis is!
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xx
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